(Editor's note: An earlier version of this story incorrectly listed the location of St. Jude Children's Research Hospital.)

Connor's a big kid. He attends preschool, loves riding his scooter and reads at the level of a first-grader. He even conquers MRI scans every nine weeks at St. Jude Children's Research Hospital in Memphis, Tennessee.

When Connor, now 5, was 20 months old, he was diagnosed with brain cancer, something his St. Cloud parents, Kristin and Adam Rohde, never imagined their family would face.

"I think, like any parent, you're devastated. You don't ever think your kid is going to have cancer. We knew for several weeks leading up to the diagnosis that something was wrong. It was a relief to know what it was, but it's by far the hardest thing you can go through," Kristin said.

After the diagnosis, Connor underwent 10 months of chemotherapy and six weeks of radiation to fight the cancer, but it was unsuccessful. Determined to beat the disease, the Rohde family spent time researching their options and trusted the guidance of a Minneapolis-based family oncologist who laid out multiple treatment options and ultimately recommended they place Connor on an experimental drug.

In September, Connor will have been on the drug for two years, and his tumor has shrunk as a result. His reaction could be called just shy of a miracle.

In comparison to other children who have taken the drug, Connor has seen the most longevity.

Trying drug

Dr. Melinda Merchant, clinical director of the pediatric oncology branch at the National Cancer Institute in Maryland, said brain tumors can be difficult to treat because they are more resistant than other cancers to standard care.

"It's almost more than norm in pediatric oncology to consider a clinical trial, to attempt to learn how to apply a new type of treatment or drug to that situation," Merchant said.

Having already been through the initial test tube stages and Phase I, where the drug is tested for dosage, it seemed the recommendation was the best option.

"The drug had the least amount of immediate side effects and showed more promise, so that's kind of why we went this route. There's certainly risk that long-term things could go wrong, but not treating his cancer wasn't an option," Kristin said.

In June, the Rohdes attended at St. Jude fundraiser at the Minnesota Valley Country Club in Bloomington where Kristin shared a five-minute story about Connor's journey and encouraged attendees to donate to the research she believes has been responsible for her son's improved health.

"There's always the risk that his cancer will adapt and grow, even on this drug, and we know that, and we've been given a lot of time with him," Kristin said. "We're grateful for every moment that we have with our children."

Connor's 8-year-old brother Aiden has been instrumental in his ability to cross milestones by encouraging him. Watching Aiden ride his scooter is what prompted Connor to want to do the same.

Still, the cancer has caused setbacks. He has delays in his motor skills, fatigues more easily than his peers and uses a weighted writing utensil in class because his hands shake.

But even that hasn't stopped him from being the outgoing child he is.

"He's done a great job of being a kid. And that was our goal, for him to experience childhood as normal as possible. ... Connor loves to show off his dance moves, because they're very funny, white guy dance moves," Kristin said.